TOPLINE:

A subanalysis of survey responses from 385 individuals younger than 40 years with advanced breast cancer (ABC) highlights significant challenges across these patients’ journeys. Key issues include delayed care seeking, low rates of treatment options offered, and severe financial toxicity.

METHODOLOGY:

• ABC is incurable, but treatments can slow its progression for several years. The number of people, including young women, living with this type of cancer is unknown.
• An initiative led by the Young Survival Coalition (YSC), called the Project 528 survey, gathered insights about the challenges women younger than 40 years with ABC face.
• The survey included 3881 respondents from 67 different countries, and the researchers conducted a subanalysis of 385 women younger than 40 years with ABC.
• The subanalysis provided information about diagnostic challenges, treatment disparities; financial, psychological and other personal difficulties; and advocacy needs of young people with ABC.

TAKEAWAY:

• Nearly half (48%) of the women younger than 40 years with ABC have children younger than 18 years.
• Despite 84% feeling able to ask questions at diagnosis, 40% delayed seeking care, often due to provider dismissal, lack of awareness, or fear. Self-detection of symptoms led to diagnoses for 85% of the patients, with 14% having been diagnosed through clinical screening or routine care.
• Access to precision diagnostics varied, with 90% having received genetic testing and 59% having received genomic or companion testing. While 77% understood their treatment rationale, 1 in 4 lacked clarity, and only 46% were offered more than one treatment option. Targeted therapies had the lowest levels of patient understanding.
• Eighty percent reported psychological distress. Body image, fertility, and sexual health concerns were reported by several respondents, but were rarely addressed, according to the subanalysis.
• A high percentage (64%) of respondents included in the subanalysis reported employment disruption post-diagnosis. Financial toxicity was severe, with 40% having incurred medical debt post-diagnosis, and financial security was down to 3% post-treatment from 51% prediagnosis.
• Peer-driven digital communities were a vital source of connection, information, and empowerment, but 43% of respondents said their care team did not refer them to these.

IN PRACTICE:

“Through this research, YSC underscores the need for a reimagined ABC care model grounded in equity, communication, and whole-person support. Advocacy priorities include age-inclusive diagnostic pathways, shared decision-making, access to fertility preservation, integrated mental health care, and systemic reform to reduce the financial and emotional toll of ABC,” the authors wrote in their abstract.

Fatima Cardoso, who was not involved in the new research, said: “This is an important study that shows, for the first time, the experiences of young patients living with advanced breast cancer and the challenges they face in their daily lives. It is concerning that not all of the women in this study were offered tests to see whether or not they had inherited cancer-causing genetic mutations, and to understand the biology of the tumor itself.”

“In an age of precision medicine, all breast cancer patients should have access to these tests as they have a crucial role in treatment decision-making and hence impact on survival and quality of life,” continued Cardoso, who is a medical oncologist and President of the ABC Global Alliance.

SOURCE:

The authors of the research are Jennifer Merschdorf and Mary Ajango of YSC. Merschdorf was listed as the presenter of the Project 528 survey results from Abstract OR36 at the Advanced Breast Cancer Eighth International Consensus Conference (ABC8) in Lisbon, Portugal, on November 6.

LIMITATIONS:

While respondents came from many different countries and cultural backgrounds, a significant number of the responses came from women living in the US. Other limitations include that the data were self-reported, which may introduce a potential for recall bias.

DISCLOSURES:

YSC funded the study with support from Daiichi-Sankyo, AstraZeneca, Exact Sciences, Lilly, Pfizer, and Gilead. Merschdorf, who is the CEO of YSC, had no conflicts of interest to declare.